Laura

Ariella, I am so glad that you are getting some answers and treatment that is helping! Do you have any further testing for the myasthenia coming up or is this the definitive test? I am so thankful that they caught this... Take care. Laura

Hi Corina, I am very glad that you are to keep receiving an income. It is sad that you have to give up your career. That's a really difficult thing to realise. Sending hugs... Laura.

Hey Nina and Melissa, you girls keep on pushing! You are doing great! You'll both be feeling improvement soon, so hold on for a little bit longer. Laura

Yay!! Very happy to hear that! (and you get to keep your kidneys to boot!) Laura

I'm rooting for you Miriam! Good luck tomorrow! Laura

Hi Amy! I've noticed some of the same things... mine seems to sort of fluctuate at times though. For example, sometimes when I use the washroom I can't tell if I am urinating or not, other times it's fine. I have some areas on the tops of my feet that don't have much feeling and some on my legs. But then, sometimes my feet just burn and I can't stand anything touching them! I don't know, it's just weird. I slammed my hand in the door a couple of weeks ago and didn't really feel it, though my hand was bruised, swollen, and bleeding. It was suggested that I had Pots with autonomic neuropathy, so for me probably it's related to that. Laura.

Hey Steph, so glad your posting again! You always find such interesting articles! I have a bit of a concern with this part of the article also.... The few people who survive a burst brain aneurysm face another big hurdle: Within two weeks, their brain arteries spasm and about half suffer a stroke. There's no prevention; doctors merely keep patients in intensive care, poised to treat a stroke as soon as it happens. It says there is no prevention, which is not true. We give meds (nimodipine) to counteract any vasospasm for the first two weeks. Works well for most patients. I guess I was just concerned with how that sounded. The article is really interesting, and you're right, seems like it is something that would work for certaing circumstances. Thanks for posting it! Laura

Happy Birthday Angela!!! Hope you have a wonderful day! Laura

Hi Linda, I use Sorrel boots in the winter. They aren't the prettiest, but come in better colours now. (I have purple) They have different styles that are good for various temperature ranges. I buy slightly bigger, then layer two pairs of socks. You can find heated socks, as Nina suggested, at a sport/hunting type store, or they make heated insert thingys as well. If you have Mark's Work Wearhouse, they carry similar items. Laura

Thanks again girls! Laura!

Hi MJ! Don't know why you'd be getting the swelling either! It would be good for you to elevate your feet throughout the day, and also make sure your stockings are smooth (no creases!) when on. If you are having swelling and have a creased area in your stocking, it can become a pressure area and could cause some skin irritation or breakdown. How long have you had the swelling? Is it since you started a new medication? Would be good to talk to your doctor about it. Laura

Hey Nina, sounds rough. Thank goodness for the long weekend. Hopefully you'll feel improvement before back to work Tuesday. I guess all you can do is try to ride it out as best you can. Try to do some comforting things, watch a favorite movie, eat your favorite foods, snuggle in your most comfortable PJs. Hope you feel better... (how are your toes, by the way?) Laura

Hey MJ, is it only around one leg? Laura

Hi Sallyann, that's a hard situation to be in. You are handling it beautifully though. My sympathies to you and your family. Laura

Thanks again you guys! It's so nice to be thought of... very sweet! Laura

Wow you guys, thanks! That was a surprise! It's a beautiful cool day here and I'm enjoying it very much. Stacey, Happy Birthday to you as well! How neat to share a birthday! Hope you are having a good one as well! Thanks for thinking of us! xo Laura

Oh, Happy Birthday Corina!! Hope your day is filled with fun! Laura

Perse, I know I've probably asked this already, but have you been checked out for a pheochromocytoma (tumor of the adrenal gland)? You need to be tested when you are having an episode of high BP as your levels can fluctuate and result in false negatives. Some people with this have sustained high BP, others have episodic. I'm so concerned for you and I wish there was something more we could do to help. xo Laura

Linda, I'd go for the wheelchair for sure, then look into pricing out a second-hand walker for the house. Sometimes you can get an OK deal on second-handers. Laura

Steph, I was wondering what you'd been up to as you hadn't been posting much... that is some great news!! What a struggle. Good for you! You're a plucky girl! Hope you feel much better real quick! Laura

Good luck this week Nina! This will be a tough few weeks for you as you get back into the routine... things will settle back down after a bit! The first bit is always the hardest. Just hang in there and focus forward. You can do it!! It was really neat to hear about your bracelets. Maybe you could post a pic in the albums sometime? Laura

Morgan, Please don't stop posting. You need to be able to talk about this to people who understand and relate to what you are experiencing. We are all here for you and want to be able to help, especially when things are going as badly as they are right now. You've helped so much around here, you shouldn't feel bad when you need some support as well. That's why we are all here, isn't it? Were you put on any oral K+ or antibiotics? Any follow ups being planned? Are they going to contact you after reviewing you CT scan again? Did they do a urinalysis to rule out bladder infection? Anything?? Hopefully your primary will investigate this further on Wednesday. Please take good care of yourself. xo Laura

Hi girls! Just wanted to say hello to you two... I'm in Alberta and have had a similar experience to you Traci. That's great that you have a doctor with a background in the autonomic system available so close to you. I hope he turns out to be a good resource for you both. I would be interested to hear how things go for you guys... Laura

Hi girls. I just wanted to add that some people with EDS have fragile vessels, and chiropractic manouvers can be a bad idea as vessels have been known to rupture or tear with chiro manipulation. (I've been witness to this) This is just another thing to be aware of as a potential risk. As with anything, use caution . Laura.

Julie, You look like you're doing everything right... checking out all of your options thoroughly and trying your very best. Hang in there... it's really hard when you're feeling so terrible to try and get the help you need and you've been doing a great job. I'm glad that your checking out non-surgical options, hopefully there will be something you can do that will help put off the surgery for a little bit. It's good you've gotten in for the 9th- make sure you take extra good care of yourself, you've really been through the ringer lately. Laura